Exhaustion, Fibro Life, Fibrolmyalgia

I Just Don’t Know What To Do With Myself

The last few months have been worse than before.

The last few weeks have been worse still.

The last few days have been the pits.

I’m just so tired. 

My brain feels like it’s trying to waddle through treacle. Thick, sticky, treacle. I can usually work out what I need to do to take the edge off the latest arrivals to the Party Of Fibro Symptoms. I can usually find a particular med, or a particular supplement that makes me feel better. I’m used to managing my symptoms. Dammit, I’ve had enough practice over the three decades I’ve been dealing with this .

But the last few days, I haven’t felt *just* fibro-ill. I feel ill-ill, like acutely-something-wrong-ill, as opposed to chronically-ill-ill.

And that scares me.

My insomnia has been replaced by sleeping like a corpse. Whereas before, my norm was to fall asleep for a few minutes or maybe an hour at a time from 11pm onwards, and finally “go to sleep” at dawn/ 4-5am, now I’m falling asleep at 11pm, waking up briefly then properly passing out by midnight. I’m not waking in the night. I’m not even waking when B brings me coffee and my yoghurt drink to take my morning pills with at 7.30am. I’m still asleep, buried deep inside a black blanket of unconsciousness, when he brings me breakfast at 8.00. It got so bad that we had to change my breakfast to a completely cold one. Congealed scrambled egg is never appealing. Plus, I’m waking up feeling even more nauseous than usual. I have to take my meds, plus some anti-emetics, before I can contemplate putting anything else in my mouth.

Then, when I’ve eventually dragged myself free from the clutches of the big black blanket, I find I’m in tears. I force my breakfast down me. I take my supplements. I try to keep the blanket off me, I push with all my might, but it takes all my strength; I fall asleep again.  I don’t wake for hours, sometimes not til tea-time. I’m sleeping all night, then again til 4.30pm. Then I’m asleep again – properly tucked-down asleep as opposed to dozing sitting up sleeping – by midnight.

I’m sleeping up to 20 hours a day again, just like I was when all this very first got critical, back in my thirties.

Yesterday, I had to buy, write and post Father’s Day cards, and a birthday card. A simple matter of stopping off en route to the doctor’s where I was already a week overdue for collecting my monthly meds. I was to get cards, go to the doctor’s, collect my meds, order next month’s, come home, write cards, address envelopes, stick on stamps, and get B to post them in the very nearby post-box that I can only make it to on a really good day.

I managed the cards very quickly. I was slightly waylaid by a conversation with a fellow blue badge holder, over a mutual rant about non-disabled drivers taking up the disabled spaces, but nothing lengthy.  She was a pleasure to talk to.

I got to the doctor’s, but by then was so utterly exhausted that for once I was completely unable to fill out my repeats. My brain just wouldn’t do it. Waddling through treacle, it refused to even look at the forms. It was too busy concentrating on how to take the next step forwards to start mental gymnastics, even the low-level, forward-roll type gymnastics of ticking boxes. I came home, went straight back to bed and fell asleep til tea-time.

I fell asleep again after tea. Woke up at 9pm. B was working late, so we broke our usual 9pm meet-on-the-sofa agreement and got there at 10pm instead. He posted the cards for me before joining me.

We were back in bed by 11.30. He was asleep immediately (he always is), and I was asleep by 12.30. Practically unheard of for me. I was always a night owl, even before insomnia proper was booting me up the arse on a regular basis.

I had nightmares. Horrible, violently imaged nightmares.  But I did sleep through. And then found myself smothered by that big, black blanket of exhaustion and depression and sleep this morning.

Was it because I dared to go “out” yesterday when I felt too ill to do so? Was it the conversation in the car park? Was it buying and writing the cards? Was it something I took? Something I didn’t take? Something I took too much of? Too little of?

I had to go again to the doctor’s today. Monthly blood test time. Ordinarily, I try to combine the visits. I collect scripts/meds when I have a blood test or my monthly GP appointment, but this month I’ve been so ill that I was over a week late collecting my meds, and had to make an emergency run yesterday. I only noticed I was running out of essential stay-alive meds when I realised my pot of them was nearly empty on Wednesday. I’m never late collecting them. Never.

I was too ill to do the repeats yesterday, so told them I’d bring them in today. Fat chance. I was too ill today too.

The first thing that penetrated the black blanket this morning was pain. I seem to have pulled a muscle in my shoulder during the night.  Then nausea. Then gut cramps.  Then my mouth tasting like a dirty bird cage. Then enveloping exhaustion. Then tears.

Much later, I dragged myself out of bed. Dragged some jeans and a sweatshirt jacket on over my pj’s. Dragged myself in for bloods. Sat in the waiting room, with my stupid rollator, head resting on my arms, arms resting on my rollator’s padded handles. My arms hurt. My legs hurt, being shoved under the seat of my rollator, where I had to have it close enough to lean on. Tears rolled down my face.

My nurse was running late. She’s lovely. She took my blood, with the minimum of pin-cushioning (she’s the only nurse out of the 5 there who can successfully cajole blood from my recalcitrant, chemo-screwed veins) and sympathised with me.

I was still in tears on the way out through reception. The equally lovely receptionist intervened with The Tissues. Another receptionist joined in her efforts to comfort me.  I just don’t know what’s wrong with me.

I just don’t know what to do with myself.

When I got home, B took one look at me and put me gently back to bed, practically having to carry me upstairs.

“I hate this. I just want to be normal,” I sobbed.

All efforts at staying awake failed. Despite managing to make a couple of comments on here first, the black blanket smothered me again. Again, I woke up to B standing there with food on a tray for me. Again, I felt sick, tearful, in pain, exhausted,  I’ve slept more than 12 hours already today. Even the phone ringing didn’t wake me up. I vaguely heard some distant noise, but couldn’t surface. I just couldn’t.

And I just don’t know to do with myself.

This isn’t a flare. Or if it is, it isn’t a normal flare. I feel too ill, too toxic, too exhausted. It’s taken hours to write this. I can normally write faster. I type fast, think fast. My downfall is usually that I have to keep going back and refining, editing, changing things. It isn’t usually that I can’t think what to say, but how best to say it.

But I’m smothered by a black blanket and my brain’s waddling through treacle, so if it’s just a bit rubbish today, please forgive.


45 thoughts on “I Just Don’t Know What To Do With Myself

  1. I, too, am suffering from sleeping 20 hours out of 24 almost. I went through a fairly normal period and then something happened and I can’t figure it out at all. It messes up my pill taking and eating too.


  2. The thing about chronic pain is that, no matter the cause, the condition is progressive. You can stabilize your pain levels from time to time, but year after year, the pain travels and increases. It’s hard to look back over 30 years and pinpoint the month or year in which that happens, but I’m the type of person who analyzes everything, including the increases in my pain levels. So, yes, I’ve sat down and charted my pain’s progression.

    My pain started as headaches and tooth pain, which was bad enough. But then it traveled into my neck and shoulders, and eventually, all the way to my feet. The pain is not at the same level in every part of my body, with my head pain being the worst. But adding them all together clearly shows progression.

    My pain levels don’t ever go below a 7 these days, but my 7 today is a lot worse than a 7 from two decades ago. Having to stay within the 1-10 pain scale is very limiting and these measurements aren’t able to adequately show the progression over the years.

    Liked by 1 person

    1. I think the pain level charts are subjective anyway. My 5 and your 5 are not going to be the same since they are based on your worse pain ever. Compared to giving birth it is not a 10, but compared to yesterday it might be an 8. Subjective. They need other ways to keep track of pain.

      Liked by 2 people

    2. Totally agree. I don’t honestly see how anyone can say otherwise, I truly don’t. Every time you think you’ve got a handle on it, that it can’t get worse than this, somehow it does. I don’t understand how all the medics can insist fibro and chronic pain aren’t progressive. Anything that gets worse is, by definition, progressive, no? And yes, as Tessa says below, even our own interpretation of the standard pain chart depends on our previous experiences of pain. I’ll check out that link, thanks 🙂

      Liked by 1 person

  3. Although I’m not a doctor, I have diagnosed you with reverse Seasonal Affective Disorder. I am prescribing a vacation in Hershey, Pennsylvania, where you can never run out of chocolate. Then it’s on to Iceland, where it is a heavenly 53 degrees F. The chill in the air will brush away all your cobwebs, and the beauty of this country will cure your fibro.

    Hope you feel better soon. 🙂

    Liked by 1 person

  4. I’m noticing that my flares and other daily symptoms have changed over the years. I was on the same meds one year ago, but I was in worse shape then as a 5. Now I’m never below a 6, presently flaring at 9 now, BTW. I have also had a change in sleeping patterns. I hope that you find a way through. So far, I think you’re a great strong lady. And I have much respect for you and your posts. Be well, sister! Laugh and smile and drop off a pain point! ❤

    Liked by 2 people

      1. It does depend on a lot of extras, like I have the DDD, and other joint problems which confuse me at times just because I can’t figure out which disease is acting up! ROFLMAO mine are progressive, but the fibro being progressive in me? I’m not sure! I’m sure that you’ll be fine. It sounds like you get out and about, I haven’t the luxury of even exercising, so I’m not the greatest expert on the subject. I’m learning with you. See you about, sister! ❤

        Liked by 1 person

      2. Ummm, no, I don’t get out and about except to drag self to medical appointments. That’s pretty much it. Most days, I don’t “get up” til 9pm, and then that’s to meet B on our sofa for watching TV comedies and dramas for an hour or two before one of us falls asleep and we go back to bed. I live in my bedroom. You, from your posts, get up and do chores every day, which I stopped being able to do years ago. I hate being so dependent. It makes me anxious.
        My fibro is worse than jt was even a few months ago. That, to me, makes it progressive. How can it NOT be? We get no repair work done because we don’t hit Deep Stae 4 Restorative sleep. You think it’s a coincidence that fibro co-exists with so many other conditions? I think – and it’s only my unqualified, non-medical opinion – that we get sick first at the biggest genetic weakness we have when the lack of stage 4 sleep makes the weakness worse. It progresses from there. And every weakness we have is pushed further by the incessant lack of restorative sleep.
        Everyone’s fibro is different because we all have different genetic weaknesses and strengths, and the different life experiences on top of that, and different life styles, different treatments again on top of those factors. Who knows? You could be having non-progressive fibro, Rick, but I know mine is very much progressive. If it wasn’t, if it had already peaked at its worst, why would I carry on getting worse every passing year?

        Liked by 2 people

      3. My chores are actually very lite activities. I spend most of my days on the couch too. I’m not trying to minimalize your pains. I’m sorry for any misunderstanding. Be well.

        Liked by 2 people

      4. I’m not trying to minimalise yours, either. I didn’t take exception to that, it was the denial of progression I object to. As I said, everyone’s experience of fibro is different, and they’re all shit, every one of them. I just get mad when rheumatologists say it isn’t progressive or inflammatory, when, to me, it’s very obvious that it’s both of those things. You might be the exception, and you’re the best judge of you. Mine IS progressive, despite my very best efforts to reverse it, I can’t even keep mine static 😦

        Liked by 1 person

      5. I promise to always separate the fact from fiction in my posts. And I never want anyone to feel that I am minimalizing any pain and/or suffering. Friends? 💆🌞👀💚

        Liked by 1 person

      6. I thought everyone’s posts here were factual – are they not??? Mine are!

        Confess was a bit irritated by your statement that I seem to get out and about ok…….it’s blatantly obvious that I can’t even get out of bed most days, never mind trot round on the social razz! I get enough assumptions from people IRL as it is, all in the name of positivity, and sometimes it gets too much. I’m only human, I’m no saint.

        Of course we’re still friends. I don’t have a keyboard full of emoticons to add anything here!

        Liked by 1 person

      7. I wasn’t trying to be facetious. I am just writing out my feelings in my posts. I don’t think there’s any misunderstanding, I don’t know how I keep making you mad. I really don’t want to. I’m sorry.

        Liked by 1 person

      1. Haha, you know what I mean. There’s no physical way of removing me from the body I’m stuck inside. I can remove myself emotionally, but physically, I’m stuck with being me.

        Liked by 1 person

      1. Yes, thankfully kept away from the hospital. I have my first Pain Clinic appointment on Thurs and I’m so hoping that it’s going to be useful. Don’t think I could take any more disappointments. x

        Liked by 1 person

  5. Perhaps you caught a bug of some sort, perhaps a stomach bug. It’s little viruses that don’t bother anyone else that effect me like that. Then I normally get a lovely flare when the bug is gone just so that I don’t forget fibro sucks too.

    Liked by 2 people

    1. Yes, I’ve been thinking the same thing….this feels more immune-system-based than flare-based. No migraines yet, but incontinence pad and Bridget Jones knickers in place currently 😦 No IBS, as such, not since this morning, just……IBS products without the cramps now. Think general immune system issue. Just feel so ill. X

      Liked by 2 people

  6. I hate to tell you, it sounds like a flare and I’d love to tell you solutions, but I have few except to get through it.
    First off, you saw your doctor to make sure it’s nothing else.
    What I try during these trying times is to try something different. Do less or more of things that make you feel worse or better.
    Do you keep a F-Book (that’s my name for my Fibro journal)? Write down what you were doing, thinking, not doing and sometimes (not always) it helps during flares to see what could be going wrong.
    I’m so sorry to hear you’re not well (extreme understatement alert!), take care and hope you feel better very, very, very soon! Gentle fibrohugs!!! 🙂

    Liked by 1 person

    1. Thanks, D, but my usual flares involve copious inflammation, migraines, IBS etc, all quite specific. If this is a flare, it’s not a typical one. I can’t remember the last time I slept so much for so little result (Never before, in the field of human conflict, have so few given so much for so ….little, or whatever it is).

      I just feel like shit. X

      Liked by 2 people

      1. I get typical and atypical flares, both suck. The last time I slept well was in my first trimester of pregnancy (even before I knew)…. It’s say yahoo, if it was good sleep. Sorry this is happening, hope you feel better soon. 🙂

        Liked by 1 person

      2. Thanks, so do I . I really, really hate not being able to find a way back to normal. Even just a BIT normal would be good. I’d take, say 2 days out of 7…..that would do me, thanks. I’m not being greedy, here, am I?

        Liked by 1 person

      3. Actually, I think my immune system is having an argument with something. Either I’ve got a bug, or my immune system is being squashed by something.

        I think.

        I don’t know. Still waddling through sticky treacle 😦

        Liked by 1 person

    2. Not seeing GP til next week, today was nurse for bloods, which me and GP then go through when they’re back. I think my WBCs will come back high, ditto ESR and CRP, maybe something else will show up.

      I don’t keep a fibro journal as such (I lose all the lists I ever make), but I can usually get my brain to work out what’s gone wrong where. Plus, frankly I’m so knackered, I can’t make yet another diagnostics diary. I’m feeling out of control and stuck. X

      Liked by 1 person

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